Family Relationships: Sharing Caregiving ResponsibilitiesPosted: December 3, 2021 Filed under: Impact on Family Relationships | Tags: Area Agency on Aging, expectations, Family Caregiving, Giving back, Pamela Wilson, shared responsibility, The Caring Generation Leave a comment
Caregiving as a shared responsibility is a main theme of my book, What to Do about Mama? It is also the theme of Pamela Wilson’s Caring Generation November 24, 2021, podcast: Why Won’t My Family Help Me – The Caring Generation® by Pamela Wilson
Why Won’t My Family Help Me – The Caring Generation® (pameladwilson.com)
As is my general pattern, I will share those features of my caregiving experience that relate to Pamela podcast by using excerpts from What to Do about Mama?
I met my husband in 1966 on our first day at college. The first thing I learned about him was that he came from a military family and that his dad, mom, brother, and two sisters were all still living in Germany.
I met David’s family the following summer when they returned to the States, and I was thrilled to be included in their family life. My own family had sort of disintegrated after my father passed away a few years earlier. I always felt cared for and included by David’s family, and that did not change after we married.What to Do about Mama? p. 7
From the beginning, I considered my husband’s family to be my family—like I was a daughter and a sister rather than a daughter-in-law or sister-in-law. I experienced the family’s “life events” from that perspective, too.
In 1994, my father-in-law passed away suddenly in his sleep one night. He died in a way that many of us would “like to go.” Later, my mother-in-law told me she was not only surprised when she awoke to find him still in bed at eight o’clock in the morning, but she was shocked when she nudged him and he did not respond. This expression of emotion was more than she generally displayed. My in-laws lived in Florida, where they had moved in 1971. It was unusual for them to live in one place for so long, since Dad had been in the military for thirty years. Mom did not drive, and David and I extended an open invitation for her to live in our hometown.What to Do about Mama? p. 8
The time came when the family felt that Mom was no longer safe living alone in Florida, it was just a matter of course that she would live near us.
The general consensus was that if Mom would agree to the move, our hometown was probably the best choice because of the proximity of family members. In addition to David and me, our three grown children lived in the area, as well as one of Shelley’s sons. Shelley and Sandy each lived about two hours away, and it was expected that Scott could fly in easily. We anticipated that they would all make frequent visits.What to Do about Mama? p. 9
After a couple of years, my mother-in-law’s health began to decline significantly. At the time, I was working as an Assessor at the Area Agency on Aging. My job impacted my attitude about caregiving in a number of ways. First of all, I felt that my career experience had uniquely qualified me to be a caregiver. Secondly, I was influenced by many of the caregivers I had observed on my job.
*Families that had attached in-law quarters—close but separate—appeared to me to fare better. *Caregivers demonstrate love and appreciation through the sacrifices that they make. I was moved to tears by a gentleman who had “retired” early to care for his mother with advanced dementia. He told me, “Miss Barb, my mother does not know who I am. But at night, when we sit on the couch watching TV with my arm around her and her head on my shoulder, it is all worthwhile.”What to Do about Mama? p. 39
I was gratified to be able to “give back” to a family that had given so much to me.
I had the opportunity to demonstrate to my mother-inlaw and siblings-in-law my appreciation for being a part of their family since I was eighteen years old. I was also able to show thanks to my parents-in-law for providing support in our times of need. Most of all, I was able to show gratitude for their assistance and encouragement in helping to provide our children with their college educations. This was to be my gift to my all of my in-laws.What to Do about Mama? p. 35
So, my mother-in-law moved in with us and I quit my job to be her fulltime caregiver. The arrangement lasted for four years—the first two were good—the last two were not. It had been my expectation that my husband’s family would pull together like another family I had the pleasure of observing.
*I remember one snowy day driving down a gravel driveway to an old family homestead and being surprised that all five children took the time to come to the assessment for their mother to receive services.What to Do about Mama? p. 223
*One thing that becomes very clear from our reading of the caregiver responses and the stories in this book is that caregiving has a profound impact on family relationships. If your family unit has always been strong and you all pull together to meet this challenge, your relationship will probably grow even stronger from sharing responsibilities and supporting one another through the experience.
But ultimately, this was not the outcome of our caregiving arrangement.
Despite a good multi-decade relationship, the difference in our family cultures and its impact on who we were as people was just too vast. Once the trouble began, interaction among all parties became increasingly difficult, and then impossible. That was the quicksand I never saw in my path.What to Do about Mama? p. 40
Click on the following link to listen to Pamela Wilson’s Podcast about the five reasons why families won’t help. Why Won’t My Family Help Me – The Caring Generation® (pameladwilson.com)
Five reasons why family won’t help:
- If your family members are not caregivers, they may not understand what you do all day.
Understanding the responsibilities of any job—caregiving included—requires an understanding of the job responsibilities. It involves experiences hands-on practical tasks under the type of emotional stress many caregivers experience. Everyone involved needs to learn that there is a big a difference between help that helps and help that creates more work for you. Oftentimes family members who are not caregivers stand on the sidelines giving advice or directing the caregiver what to do, which is generally not appreciated. Good caregiver communication is the key to overcoming these challenges, but there are no guarantees that all parties will be proficient at communicating.
- Dealing With Critical Family Members.
Family members can be judgmental and refuse to help when you don’t do things “their” way, which they consider to be the “right” way. They may then choose not to be involved. To cope with your critics, try not to take the criticism personally with the understanding that that there is usually a deeper reason for their response that has nothing to do with you. (For example, guilt at not stepping up like you.) Choose how you respond be aware that there is the potential for this negative event to be an unforeseen positive.
- Differing belief systems.
Changing beliefs is as difficult as changing habits. Some families believe that family takes care of family regardless of the situation, others do not. Even withing the same family, there are factors from childhood that have an impact you don’t know about. (Sibling rivalry is a good example that comes to mind.)
- Family interactions with caregiver.
What is your history? Have you let others down? Broken commitments? Been unreliable or untrustworthy? Hard feelings can be harbored for years. The intentions of caregiving siblings may be met with suspicion. Both past parent-child relationships and sibling relationships impact the type of care aging parents receive, and current belief systems have influence as well. Family beliefs can conflict with the family working as a team. It is most common that one caregiver bears most of the responsibility for an aging parent.
- Family May Not Help Due to Life Situations or Timing
Different siblings may be in different life stages. You may need to give the wake-up call you can no longer be the caregiver before other siblings to step up. Since you’ve been managing point your sibling may hesitate to upset the status quo. If that’s the case, it’s up to you not to let a lack of family support place your life on hold. (Be prepared for your relationship to be permanently changed.)
Setting personal boundaries in caregivingPosted: September 22, 2020 Filed under: Caregiving--Positives and Negatives, Emotional and Physical Challenges, Impact on Family Relationships | Tags: caregiving plans, caregiving stress, family mediation, family meeting, friendly visitors, Pamela Wilson, personal boundaries, shared responsibility, The Caring Generation 2 Comments
Are you feeling that caregiving is ruining your life? Listen to the podcast: Caregiving Ruined My Life – The Caring Generation®
by Pamela Wilson | Sep 15, 2020 |
In this podcast Pamela Wilson speaks to an unspoken belief of many caregivers: “Caregiving Ruined my Life.”
Although I never thought or felt about caregiving exactly in these terms, I guess you can say I came close. Because caregiving had drained me, both physically and emotionally, my thoughts ran more along the lines of: “I squandered the last best years of my life.”
As part of the process of regrouping after caregiving, I wrote What to Do about Mama? I wanted to share insights about what I learned. I wanted pre-caregivers to know beforehand what they were getting into. I wanted current caregivers to have more tools to work through the inevitable hurdles. I wanted to give post-caregivers encouragement that there is life after caregiving, and more importantly, how to avoid burdening their own children with the same degree of responsibility.
Wilson states that many caregivers even feel that caregiving almost killed them, and I can personally attest to the truth in that statement as reported by those caregivers who submitted their stories for inclusion in What to Do about Mama?
“My overall caregiving experience has nearly killed me.” (Katrina’s Story)What to Do about Mama? p. 105
“At times, I have felt her suck the life right out of me.” (June’s Story)What to Do about Mama? p. 144
Wilson affirms that caregiving can be rewarding, meaningful, and joyous, but goes on to say: “Let’s be realistic.” Caregiving might be the most difficult responsibility you will ever accept. Few family members report raising their hands to volunteer for the job. Many caregivers feel they had no other choice, because nobody else stepped up to offer help.
Following are ten ways caregivers can take back their lives, according to Pamela Wilson. I have listed them along with my affirmations and rebuttals, noted in red.
- Tip #1: When elderly parents are adamant about refusing help, stop pushing. Set boundary lines. Learn how to take back your life one step at a time. You’re not going to abandon your parents, but you may also not be that caregiver who loses your life when your parents’ lives fall apart. In the beginning, we felt guilty that my mother-in-law had been pushed into moving closer to family. As front-line caregivers, we accommodated her every need. Later, when her needs increased, she moved into our home. Eventually I began to set boundary lines which were not well-received. I was told everything was done for my convenience and that I was selfish. Boundaries are of critical importance. They are not a magical solution.
- Tip #2: Manage your work-life balance while honoring your sense of duty. Hire in-home caregiving aides, consider other supportive living arrangements such as assisted living facilities, avail yourself of available community resources. We did not hesitate to enlist Hospice services. They helped my mother-in-law live life to the fullest, even traveling by plane to a granddaughter’s college graduation. She was on Hospice for two years. It’s a fallacy that the patient must be on his or her deathbed before receiving Hospice services.
- Tip #3: Not all families get along. The longer you continue being “the caregiver”, the longer the problem will persist. Develop a plan to take back your life–and follow through. Your relationship may suffer, but if you become emotionally and physically drained, your resentment will grow, and family relationships will suffer anyway. Don’t allow this burden to become solely your problem. We had a family meeting and thought we had an established plan. Near the end, it took a family mediation before expectations were met. Don’t undertake a commitment based on assumptions. Draw up a concrete and specific plan of how everyone can and will contribute. Sign, date, and revisit the plan often so that it will continue to meet growing needs. Again, your relationships may suffer, but is better than the following.
- Tip #4: “Caring for my elderly mother is killing me.” Acknowledge it and then take your life back. There is life after caregiving. (But that doesn’t necessarily mean you can turn back time.)
- Tip #5: If something is making you sick, acknowledge the impact of caregiving stress and having to shoulder the brunt of the burden. While caregiving, I contracted the shingles. Fortunately, they weren’t too bad. Stress related? I believe so. I also damaged my knee while squatting down to tend my mother-in-law’s skin tears. The knee(s) deteriorated to that point of needing replacements and ended my caregiving responsibility. My mother-in-law moved from our home to her daughter’s and lived one more month.
- Tip #6: It’s frustrating when people say, “Call me if you need help” and are then not there for you when you need them. Well, sure. But sometimes the caregiver needs to follow through with asking and to be specific in their needs. And sometimes, the parent is resistant. My husband and I used the services of a Friendly Visitor from Hospice so that we could have a “date night.” I would have dinner prepared so that my mother-in-law could feel that she was entertaining a “guest” rather that feeling like she required a babysitter.
- Tip #7: Caregivers who stop working to be full-time caregivers, don’t foresee that caregiving work will become all-consuming, isolating, and depressing—often their only outside social and mental activity. It can impact you financially, mentally, and physically. Anticipated months can turn into years. Consider the potential impact ahead of time. When my mother-in-law moved in, I emphasized that I wanted to maintain time for my daily walk. Because we all valued her ability to have social contact, I would take my mother-in-law to the senior center twice a week to play bridge. After she was settled there, I would hightail it over to Curves for a workout and would then proceed to one of my daughters’ homes for a visit with grandchildren. Fortunately, everything was in a fifteen-minute radius of here and there. This became my primary survival technique—a real win-win situation.
- Tip # 8 Most families don’t give enough prior consideration to the challenges of living with elderly parents. Parents and children have different lifestyles, and this decision changes lives forever. It’s not easily reversible. Separating is like getting a divorce. Feelings are hurt when a caregiver says, “I can’t do this anymore.” I worked at the Area Agency on Aging and had a lot of experience visiting families and observing various caregiving models, and we definitely gave this a lot of thought. But even after knowing someone for 40+ years, there are still surprises. As an in-law, I found out more about my mother-in-law that I ever wanted to know, and I’m sure she felt the same. When it came to the point that she had to move out of our home she said, “You’re evicting an eighty-nine-year-old woman!” and “I feel protected here.” (What to Do about Mama? p. 32.) Talk about guilt!
- Tip #9 If you made the decision to give up a full-time job and live with elderly parents, you may have a great deal of apprehension and fear about getting back out there. I did give up a full-time job, but since I was able to retire, this was not a big problem for me. It is common for caregivers to feel, “What now?” when caregiving ends. I bypass that one, too, probably due to my status as a daughter-in-law, and also because I was focused on having bilateral knee replacements and going through rehabilitation.
- Tip #10: Caregiving is a marathon—not a sprint. It doesn’t end quickly. Every choice that you make might be questioned by your family members. You will be judged for helping too much, not helping enough, for being selfish, for expressing your feelings. Whatever happened to the idea of enjoying life while you’re young? This was our experience exactly. Caregiving needs can develop suddenly. When “the crisis moment” occurs you often find yourself woefully unprepared. Bottom line for the siblings is: “If they want to weigh in on what the solution should be, they have to participate in the process that leads up to that.”
See Chapter One in What to Do about Mama? Expectations and Realities of Caregiving for my complete caregiving story. The following excerpt is a summary of the experience.
I thought we did a lot of things right:What to Do about Mama? p. 39
*We had a full family discussion among the siblings when developing the caregiving plan, both when Mom moved north and later when she moved into our home.
*We communicated frequently and openly, both verbally and in writing. Although e-mailing has its drawbacks, it was efficient.
*We did our best to respect Mom’s independence. Initially, she lived in an independent retirement home. When she moved in with us, she had her own space with her own furniture and belongings.
*We provided Mom with a multitude of opportunities to socialize with both family and friends.
Still, we did a lot of things wrong:
*We did not include Mom in our initial discussions. Ultimately, the decision was hers, but she was strongly pressured.
*We did not discuss our values or explore other options to moving north. What took precedence? Autonomy or safety?
*We made too many assumptions and had too little commitment. Our expectations were too high. Caregivers are giving people who often try to maintain a sense of control. Caregiving is fraught with a lack of control over both the situations that occur and the people involved. Our expectations of others were unrealistic; our expectations of ourselves were self-defeating.
*Despite a good multi-decade relationship, the difference in our family cultures and its impact on who we were as people was just too vast. Once the trouble began, interaction among all parties became increasingly difficult, and then impossible. That was the quicksand I never saw in my path.
Ultimately, my husband and I have come to believe that it takes a caregiver to understand a caregiver. They did not understand.What to Do about Mama? pp. 39-40
Caregiving model: living with an elderly parent in your homePosted: May 1, 2020 Filed under: Assuming Caregiving Responsibilities, Caregiving--Positives and Negatives, Impact on Family Relationships | Tags: Caregiving contingency plans, caregiving resentment, caregiving sacrifices, caregiving trap, differences in family cultures, disintegration of caregiving arrangement, in-home caregiving model, in-law caregiver, long-term caregiving, Pamela Wildon, scope of caregiving responsibilities, shared responsibility, spousal relationship and caregiving, the care receivers escalating needs, unforeseen complications of caregiving Leave a comment
The Caring Generation, with host Pamela D. Wilson: Living With Elderly Parents Radio Show
This is a great program for anyone thinking about having an elderly parent move into their home. Pamela Wilson provides information to discuss and consider prior to making a commitment of this magnitude.
In-home caregiving is the model my husband and I undertook to provide care for his mother. Our arrangement had one major difference: I assumed the role of primary caregiver as a daughter-in-law. Our experience is detailed in What to Do about Mama?
Although our caregiving situation had a number of positives, there was also more difficulties than we ever foresaw. I am highlighting those points because they have the most significant application to the disintegration of our caregiving arrangement.
- Although we discussed the arrangement extensively with all family members beforehand, we did not establish firm parameters of shared responsibility in a formal, written, and a notarized agreement.
- We made sacrifices above and beyond what the others were willing to do, which eventually led to resentment.
- We did not realize how much sharing our home would change our spousal relationship.
- Unanticipated details surrounding the situation can create unforeseen complications.
- We underestimated escalating needs, which increased the scope of responsibilities. Neither did we fully anticipate the number of years involved with providing care.
- We did not recognize the differences in our family cultures, which led to serious misunderstandings.
- Over time, caregiving can become a trap that can undermine the adult child-parent relationship, as well as relationships with other family members.
- Caregiving can be very long-term. We did not prepare a contingency plan for if and when the arrangement became unmanageable.
Remember: Do not enter a live-in caregiving arrangement lightly.
An interview with the authors of “What to Do about Mama?: A Guide to Caring for Aging Family Members”Posted: May 30, 2014 Filed under: Miscellaneous | Tags: Alzheimer's, Barnard-College, Boomer-&-Beyond-Gold's-Gym, catharsis, commitment, contract, cooperation, dementia, depression, emotional-and-physical-fatigue, everyone-is-a-potential-caregiver, exhaustion, expectations, families, guidance, Homeland-Hospice, journal, people-in-the-trenches, present-past-future-caregivers, proactive, published, sandwich-generation, second-guessing, shared responsibility, situational-differences, support groups, validation, value-system Leave a comment
An interview with the authors of "What to Do about Mama?: A Guide to Caring for Aging Family Members".
Shared ResponsibilityPosted: April 20, 2014 Filed under: Impact on Family Relationships | Tags: caregiving-book, childhood-rivalries, conflict, expectations, family-mediation, primary-caregiver, resentment, shared responsibility 3 Comments
An AgingCare.com article “Getting Your Siblings to Help with Caregiving” by Linda Hepler, BSN, RN, stresses the importance of sharing caregiving responsibilities with siblings and makes suggestions about how to accomplish a cooperative family relationship.
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Hepler states that when an elderly parent’s health begins to fail, one adult child generally becomes the primary caregiver. And while this may work well for a time, it can eventually cause resentment when you find yourself shouldering most of the burden—especially if other siblings live nearby yet don’t help out. She then goes on to make the following recommendations:
- Call a family meeting
- Make a written agenda
- Do as much listening as talking
- Be specific about what you want
- Divide up tasks
- Don’t expect total equality
Hepler stresses that it’s normal to experience tricky dynamics when siblings get together as adults, since childhood jealousies and rivalries as well as historical grudges may resurface under the pressure to work together and make sacrifices.
Hepler recommends that if all else fails, an option for getting past stressful communication is a relatively new concept—family mediation—an informal process in which a neutral third party sits down to help people in conflict to better understand their individual interests and needs so that they can agree upon a workable solution to the problem.
Hepler emphasizes that even when successful in achieving a better distribution of responsibility, it’s important to communicate, communicate, communicate.
We have discussed the family meeting previously (See the February 22, 2014 entry: “Family Meeting”), but the concept of “shared responsibility” with siblings cannot be overstressed. It is a major concept in my book, “What to Do about Mama?” and is central to chapter 2, in which I recount my own personal caregiving story, including experiences with family meetings and family mediation. Following are some excerpts from the book, relevant to this topic:
- A productive family meeting can build a strong foundation for family caregiving. Do you share common values? Talk about what is most important to all of you—autonomy or safety. Establish common goals. Divide responsibility based on the strengths and abilities you bring to the family. It is important to be specific. Develop a contract that delineates the commitments family members have made, and solidify those commitments with signatures that verify that everyone understands and agrees to the plan. Be sure to date the contract in case changes are needed later on. WTDAM p.54
- You’ve taken on the responsibility of family caregiving. You may have held a family meeting to set up a care plan. In an ideal world, all the family members would have done their best to foster a nurturing caregiving relationship among everyone involved—parent(s) and children alike. You have embraced mutual trust, respect, kindness, and patience. You have rejected guilt and resentment. You communicate effectively, based on listening to what everyone is saying. You compromise when problem-solving to find the solution that works best for everyone. You and the family have assigned tasks according to individual strengths and skills and with an awareness of individual needs. You share caregiving responsibilities, and have found that teamwork reduces tension and brings your family closer together. It even promotes the possibility of healing old wounds. You keep your expectations realistic, and your family members, in turn, provide you with needed emotional support. They allow you to vent and take steps to alleviate your stress.
How well does this describe your family’s caregiving experience? In the real world, when there’s a pressing need to collaborate and make important decisions (especially with a resistant parent), you may not all be in top form, but, rather, anxious and overwhelmed. Your relationships may be knocked off balance by the magnitude of caring for aging or failing parents. Feelings for each other shift, sometimes weakening the ties and intensifying sibling rivalries of the past. There may be jealousies related to perceived “favored children” or worries about issues of inheritance. A frequently reported caregiver frustration is the lack of consistent help from other family members; a large portion of sibling caregivers (40%) end up having serious conflicts with each other. Most of us do not even see that we are about to become mired in the quicksand until we step in it and it begins to suck us down. WTDAM pp. 107-108